Abstract
Purpose
Patients are a critical source of information about the quality of the components of cancer care that contributes to optimal psychosocial outcomes. Recently published research was examined to determine the: (1) proportion of studies that examined at least one of 14 components of cancer care, (2) the proportion of studies that included multiple components of care, and (3) the phase of the cancer care pathway in which data collection occurred (i.e. pre-, during and post-treatment).
Methods
MEDLINE was searched to retrieve all data-based publications indexed for two international psychosocial cancer care journals (Supportive Care in Cancer and Psycho-Oncology) over a 2-year period. A total of 333 publications yielded 214 eligible publications that were assessed against the 14 components of care for which measurement by healthcare providers at multiple phases during cancer care is recommended. Publications were coded based on the: (1) specific component/s of care focused upon in the research, (2) number of components examined and (3) timing of data collection.
Results
The most frequently assessed component of care was physical and psychosocial screening (n = 198, 93%). Most studies (n = 187, 87%) examined a single component of care. No studies assessed all 14 components. Only seven studies (2.1%) examined components of care across multiple phases of the care pathway.
Conclusions
Recently published studies have examined limited segments of patients’ experiences of cancer care. To improve psychosocial outcomes among people living with and beyond cancer, there should be a greater focus on patients’ experiences across multiple components and the whole care pathway.
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References
Institute of Medicine (2001) Crossing the quality chasm: a new health system for the 21st century. National Academies Press, Washington D.C. Available from: http://www.nap.edu/openbook.php?record_id=10027&page=39. Accessed 23 Nov 2018
Australian Commission on Safety and Quality in Health Care (2011) Patient-centred care: improving quality and safety through partnerships with patients and consumers. ACSQHC, Sydney
Epstein RM, Fiscella K, Lesser CS, Stange KC (2010) Why the nation needs a policy push on patient-centered health care. Health Aff (Millwood) 29:1489–1495
Cancer Australia (2014) Clinical guidance for responding to suffering in adults with cancer. Cancer Australia, Sydney
Clayton JM, Hancock KM, Butow PN, Tattersall M, Currow DC (2007) Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 186:S77 S9, S83
Girgis A, Sanson-Fisher RW (1995) Breaking bad news: consensus guidelines for medical practitioners. J Clin Oncol 13:2449–2456
Zucca A, Sanson-Fisher R, Waller A, Carey M, Boadle D (2017) The first step in ensuring patient-centred quality of care: ask the patient. Eur J Cancer Care (Engl). 26
Mackenzie L, Carey M, Paul C, Sanson-Fisher R, D’Este C (2013) Do we get it right? Radiation oncology outpatients’ perceptions of the patient centredness of life expectancy disclosure. Psychooncology. 22:2720–2728
Zucca AC, Sanson-Fisher RW, Waller A, Carey M, Grady A, Mackenzie L (2015) Life expectancy discussions in a multisite sample of Australian medical oncology outpatients. Med J Aust 203:405–5.e7
Waller A, Sanson-Fisher R, Zdenkowski N, Douglas C, Hall A, Walsh J (2018) The right place at the right time: medical oncology outpatients’ perceptions of location of end-of-life care. J Natl Compr Cancer Netw 16:35–41
Taplin SH, Anhang Price R, Edwards HM, Foster MK, Breslau ES, Chollette V, Prabhu Das I, Clauser SB, Fennell ML, Zapka J (2012) Introduction: understanding and influencing multilevel factors across the cancer care continuum. J Natl Cancer Inst Monogr 2012:2–10
Zucca A, Sanson-Fisher R, Waller A, Carey M (2014) Patient-centred care: making cancer treatment centres accountable. Support Care Cancer 22:1989–1997
Cancer Australia (2014) Recommendations for the identification and management of fear of cancer recurrence in adult cancer survivors. Cancer Australia, Sydney
National Breast Cancer Centre, National Cancer Control Initiative (2003) Clinical practice guidelines for the psychosocial care of adults with cancer. National Breast Cancer Centre, Camperdown
Institute of Medicine (2008) Cancer care for the whole patient: meeting psychosocial health needs. National Academies Press, Washington D.C. Available from: https://www.nap.edu/catalog/11993. Accessed 23 Nov 2018
Saunders C, Crossing S (2012) Towards meeting the research needs of Australian cancer consumers. BMC Res Notes 5:667
De Vries AM, de Roten Y, Meystre C, Passchier J, Despland JN, Stiefel F (2014) Clinician characteristics, communication, and patient outcome in oncology: a systematic review. Psychooncology. 23:375–381
Pollak KI, Arnold RM, Jeffreys AS, Alexander SC, Olsen MK, Abernethy AP, Sugg Skinner C, Rodriguez KL, Tulsky JA (2007) Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol 25:5748–5752
Fletcher C, Flight I, Chapman J, Fennell K, Wilson C (2017) The information needs of adult cancer survivors across the cancer continuum: a scoping review. Patient Educ Couns 100:383–410
Shin DW, Cho J, Roter DL, Kim SY, Sohn SK, Yoon MS, Kim YW, Cho BL, Park JH (2013) Preferences for and experiences of family involvement in cancer treatment decision-making: patient-caregiver dyads study. Psychooncology. 22:2624–2631
Barry MJ, Edgman-Levitan S (2012) Shared decision making—the pinnacle of patient-centered care. N Engl J Med 366:780–781
Jansen J, van Weert J, Wijngaards-de Meij L, van Dulmen S, Heeren TJ, Bensing JM (2010) The role of companions in aiding older cancer patients to recall medical information. Psychooncology. 19:170–179
Hack TF, Degner LF, Watson P, Sinha L (2006) Do patients benefit from participating in medical decision making? Longitudinal follow-up of women with breast cancer. Psychooncology. 15:9–19
Shay LA, Lafata JE (2015) Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Mak 35:114–131
Suls J, Wan CK (1989) Effects of sensory and procedural information on coping with stressful medical procedures and pain: a meta-analysis. J Consult Clin Psychol 57:372–379
Waller A, Forshaw K, Bryant J, Mair S (2014) Interventions for preparing patients for chemotherapy and radiotherapy: a systematic review. Support Care Cancer 22:2297–2308
Hoey LM, Ieropoli SC, White VM, Jefford M (2008) Systematic review of peer-support programs for people with cancer. Patient Educ Couns 70:315–337
Weis J (2003) Support groups for cancer patients. Support Care Cancer 11:763–768
Hanratty B, Holland P, Jacoby A, Whitehead M (2007) Financial stress and strain associated with terminal cancer—a review of the evidence. Palliat Med 21:595–607
Robinson-White S, Conroy B, Slavish KH, Rosenzweig M (2010) Patient navigation in breast cancer: a systematic review. Cancer Nurs 33:127–140
Payne S, Jarrett N, Jeffs D (2000) The impact of travel on cancer patients’ experiences of treatment: a literature review. Eur J Cancer Care (Engl) 9:197–203
Carlson LE, Waller A, Mitchell AJ (2012) Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol 30:1160–1177
Basch E, Abernethy AP, Mullins CD, Reeve BB, Smith ML, Coons SJ, Sloan J, Wenzel K, Chauhan C, Eppard W, Frank ES, Lipscomb J, Raymond SA, Spencer M, Tunis S (2012) Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol 30:4249–4255
Smith SM, Allwright S, O'Dowd T (2007) Effectiveness of shared care across the interface between primary and specialty care in chronic disease management. Cochrane Database Syst Rev (18):CD004910
Earle CC, Neville BA (2004) Under use of necessary care among cancer survivors. Cancer 101:1712–1719
Aubin M, Giguere A, Martin M, Verreault R, Fitch MI, Kazanjian A et al (2012) Interventions to improve continuity of care in the follow-up of patients with cancer. Cochrane Database Syst Rev 7:CD007672
Wilcoxon H, Luxford K, Saunders C, Peterson J, Zorbas H (2011) Multidisciplinary cancer care in Australia: a national audit highlights gaps in care and medico-legal risk for clinicians. Asia Pac J Clin Oncol 7:34–40
Cabana MD, Jee SH (2004) Does continuity of care improve patient outcomes. J Fam Pract 53:974–980
Brennan ME, Gormally JF, Butow P, Boyle FM, Spillane AJ (2014) Survivorship care plans in cancer: a systematic review of care plan outcomes. Br J Cancer 111:1899–1908
Ngo-Metzger Q, August KJ, Srinivasan M, Liao S, Meyskens FL Jr (2008) End-of-life care: guidelines for patient-centered communication. Am Fam Physician 77:167–174
Higginson IJ, Evans CJ (2010) What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J 16:423–435
Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC, Block SD, Maciejewski PK, Prigerson HG (2009) Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 169:480–488
Carey M, Boyes AW, Bryant J, Turon H, Clinton-McHarg T, Sanson-Fisher R (2017) The patient perspective on errors in cancer care: results of a cross-sectional survey. J Patient Saf. https://doi.org/10.1097/PTS.0000000000000368
Bryant J, Carey M, Sanson-Fisher R, Turon H, Wei A, Kuss B (2017) The patients’ perspective: hematological cancer patients’ experiences of adverse events as part of care. J Patient Saf. https://doi.org/10.1097/PTS.0000000000000347
Bryant J, Boyes A, Jones K, Sanson-Fisher R, Carey M, Fry R (2014) Examining and addressing evidence-practice gaps in cancer care: a systematic review. Implement Sci 9:37
Cooper ID (2016) What is a “mapping study?”. J Med Libr Assoc 104:76–78
Travado L, Breitbart W, Grassi L, Fujisawa D, Patenaude A, Baider L et al (2017) 2015 President’s plenary international psycho-oncology society: psychosocial care as a human rights issue-challenges and opportunities. Psychooncology. 26:563–569
Coulter A, Fitzpatrick R, Cornwell J (2009) The point of care. Measures of patients’ experience in hospital: purpose, methods and uses. The King’s Fund, London
Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW et al (2000) The impact of patient-centered care on outcomes. J Fam Pract. 49:796–804
Janelle G, Kryss M, Leigh T (2003) Written health education materials: making them more effective. Aust Occup Ther J 50:170–177
Butow P, Price MA, Shaw JM, Turner J, Clayton JM, Grimison P, Rankin N, Kirsten L (2015) Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients: Australian guidelines. Psychooncology. 24:987–1001
Holland JC, Andersen B, Breitbart WS, Buchmann LO, Compas B, Deshields TL, Dudley MM, Fleishman S, Fulcher CD, Greenberg DB, Greiner CB, Handzo GF, Hoofring L, Hoover C, Jacobsen PB, Kvale E, Levy MH, Loscalzo MJ, McAllister-Black R, Mechanic KY, Palesh O, Pazar JP, Riba MB, Roper K, Valentine AD, Wagner LI, Zevon MA, McMillian NR, Freedman-Cass DA (2013) Distress management. J Natl Compr Cancer Netw 11:190–209
Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483
Vodermaier A, Millman RD (2011) Accuracy of the Hospital Anxiety and Depression Scale as a screening tool in cancer patients: a systematic review and meta-analysis. Support Care Cancer 19:1899–1908
Carr AJ, Higginson IJ (2001) Are quality of life measures patient centred? BMJ. 322:1357–1360
Asadi-Lari M, Tamburini M, Gray D (2004) Patients’ needs, satisfaction, and health related quality of life: towards a comprehensive model. Health Qual Life Outcomes 2:32
Albrecht GL, Devlieger PJ (1999) The disability paradox: high quality of life against all odds. Soc Sci Med 48:977–988
Forshaw KL, Carey ML, Hall AE, Boyes AW, Sanson-Fisher R (2016) Preparing patients for medical interventions: a systematic review of the psychometric qualities of published instruments. Patient Educ Couns 99:960–973
White K, Johnson K (2011) Victorian patient experience survey development project: review of literature relating to survey tools used to assess cancer patients’ experiences of care. Department of Health
Tzelepis F, Rose SK, Sanson-Fisher RW, Clinton-McHarg T, Carey ML, Paul CL (2014) Are we missing the Institute of Medicine’s mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care. BMC Cancer 14:41
Jenkinson C, Coulter A, Bruster S (2002) The Picker Patient Experience Questionnaire: development and validation using data from in-patient surveys in five countries. Int J Qual Health Care 14:353–358
Brown R, Butow P, Wilson-Genderson M, Bernhard J, Ribi K, Juraskova I (2012) Meeting the decision-making preferences of patients with breast cancer in oncology consultations: impact on decision-related outcomes. J Clin Oncol 30:857–862
Ivers N, Jamtvedt G, Flottorp S, Young JM, Odgaard-Jensen J, French SD et al (2012) Audit and feedback: effects on professional practice and healthcare outcomes. Cochrane Database Syst Rev 6:CD000259
Mackenzie LJ, Carey ML, Sanson-Fisher RW, D’Este CA (2013) Psychological distress in cancer patients undergoing radiation therapy treatment. Support Care Cancer 21:1043–1051
Institute of Medicine (2013) Delivering high-quality cancer care: Charting a new course for a system in crisis. The National Academies Press, Washington, DC. Available from https://www.nap.edu/catalog/18359. Accessed 23 Nov 2018
Acknowledgments
This research was supported by a Cancer Council New South Wales Program Grant (PG16-09), a Strategic Research Partnership Grant (CSR 11-02) from Cancer Council NSW to the Newcastle Cancer Control Collaborative (New-3C) and infrastructure funding from the Hunter Medical Research Institute (HMRI). Dr. Amy Waller is supported by an Australian Research Council Discovery Early Career Research Award (DE150101262). Dr. Lisa Mackenzie is supported by a Postdoctoral Fellowship grant [PF-16-011] from the Australian National Breast Cancer Foundation. Dr. Jamie Bryant is supported by an NHMRC-ARC Dementia Research Development Fellowship. Anne Herrmann is supported by a University of Newcastle/Hunter Cancer Research Alliance Research Scholarship and has received funding support from the Hunter Cancer Research Alliance Implementation Science Flagship Program as part of the 2017 and the 2018 Research Higher Degree Award initiative. Our thanks to Katrina Wallace for research support.
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Sanson-Fisher, R., Fakes, K., Waller, A. et al. Assessing patients’ experiences of cancer care across the treatment pathway: a mapping review of recent psychosocial cancer care publications. Support Care Cancer 27, 1997–2006 (2019). https://doi.org/10.1007/s00520-019-04740-1
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DOI: https://doi.org/10.1007/s00520-019-04740-1